You Get a Say: Shared Decision-Making and Biomarker Testing in Young Adult Cancer

As a young adult cancer survivor, I remember how quickly treatment started moving and how much information I was expected to absorb along the way. There were appointments, new medical terms, treatment decisions, and a parade of acronyms, all arriving while I was still trying to wrap my head around the fact that I had cancer at 30.

If you have ever left an oncology appointment wondering what just happened, what half of those words meant, or whether you were supposed to have an opinion about the plan, I promise you are in very good company.

Young adults are often making cancer decisions while also thinking about fertility, work, school, finances, relationships, mental health, and plans for the future. Those parts of our lives do not become less important when cancer enters the picture. They often become even more important.

You deserve to understand your options and have a meaningful voice in what happens next. That is where shared decision-making comes in.

What Is Shared Decision-Making?

The National Cancer Institute defines shared decision-making as a process in which a patient and health care professional work together to decide on the best plan of care.

Your care team brings medical knowledge, clinical experience, and information about the potential benefits and risks of each option. You bring knowledge about your own life. You know what matters to you, how your body is feeling, what you are worried about, which side effects feel manageable, and what you need treatment to make room for.

Shared decision-making means receiving information in language you can understand, having time to ask questions, and being treated as an active participant in your care. You can ask your provider to explain something again, write it down, discuss another option, or take time to think. You can bring someone you trust to an appointment or request a second opinion.

This kind of partnership can be especially helpful when your care team is considering whether additional testing could provide useful information about your cancer. Biomarker testing is one example of a decision you may want to discuss together. It may offer clues about your cancer and possible treatment options, but whether testing is useful depends on factors such as your cancer type, stage, and treatment history. Your goals and priorities can then help guide the decisions that follow.

What Is Biomarker Testing?

Biomarkers are genes, proteins, gene changes, or other substances that can provide information about a cancer. They may help your care team better understand your cancer’s subtype, how it behaves, or whether it is likely to respond to a particular treatment.

You may hear biomarker testing called molecular testing, tumor profiling, somatic testing, genomic testing, or genetic testing of the tumor. Depending on your cancer and the purpose of the test, a laboratory may examine tumor tissue collected during a biopsy or surgery, blood, or another bodily fluid.

Examples of biomarkers include HER2 in breast, stomach, and some lung cancers; EGFR and ALK in lung cancer; tumor changes involving BRCA1 and BRCA2 in several cancer types; KRAS in colorectal, lung, and pancreatic cancers; and IDH in gliomas.

Biomarker testing may help identify a targeted therapy or immunotherapy, rule out treatments that are unlikely to help, clarify information about your cancer, or determine whether you may qualify for a clinical trial.

It is also important to understand the limits of biomarker testing. Its usefulness depends on your cancer type, stage, treatment history, and the biomarkers researchers currently understand. Testing may identify a treatment option, provide information that doesn’t change the current plan, or produce an uncertain result. A biomarker result can be important information without providing every answer.

Bringing Biomarker Testing Into the Conversation

If biomarker testing may be relevant to your cancer, ask your care team how it could inform your treatment options. You can also ask what the test examines, what sample is needed, how long results may take, what it may cost, and whether waiting for results could delay treatment. When the report is available, ask your oncologist to explain what it means for your care.

Questions to consider:

  • Has my cancer been tested for biomarkers, and can I have a copy of the report?
  • What did the test find, and does it change your recommendation?
  • Could the results identify a treatment or clinical trial?
  • What are the test’s limitations?
  • How might each option affect my fertility, energy, cognition, sexual health, work, or quality of life?
  • How much time do I have to decide?
  • What other options should we discuss?

You do not have to ask everything at once. Choose the questions that matter most, and bring a support person to take notes if helpful.

Help Us Color in the Gaps in AYA Cancer Care

At Cactus Cancer Society, we create spaces where young adults can talk honestly about what cancer care is actually like. We want to know how conversations about shared decision-making and biomarkers felt from your side of the exam room.

What did you understand? What felt confusing? What do you wish someone had explained differently? What helped you feel heard?

These questions will be part of our next four-week Creative Arts Book Club, Hue’s in the Moment?

Together, we’ll work through Into the Moment: A Journal and Coloring Book to Inspire Mindful Creativity by Dani DiPirro. Each online session will include coloring, journaling, grounding activities, creative connection, and good conversation with fellow young adult cancer patients, survivors, and thrivers.

During the final 30 minutes of each session, we’ll hold a compensated focus group about shared decision-making and biomarker education in young adult oncology. You do not need to have a particular biomarker, receive biomarker testing, or arrive with expert knowledge. We want to learn from a wide range of young adult cancer experiences.

As both a young adult cancer survivor and a clinician, I know these conversations can bring us back to decisions, questions, and moments that felt deeply personal, confusing, or vulnerable. I am sincerely grateful to everyone willing to share those experiences. Your perspective matters, and we will treat it with the care it deserves.

Who: Young adult cancer patients, survivors, and thrivers ages 18–45
When: Tuesdays, September 15, September 22, September 29, and October 6
Time: 5–7 p.m. PT / 6–8 p.m. MT / 7–9 p.m. CT / 8–10 p.m. ET
Where: Online via Zoom
Compensation: A $10 Amazon gift card for each focus group session attended, with $50 total for participating in all four sessions, plus a free copy of Into the Moment

REGISTER FOR HUE’S IN THE MOMENT

This season of Creative Arts Book Club is sponsored by Daiichi Sankyo (DSI), a pharmaceutical company focused on oncology. Focus group feedback will be shared with DSI in de-identified form, which means participants’ names and identifying information will not be included.

This information is intended for educational purposes and is not a substitute for personalized guidance from your health care team. Whether biomarker testing is appropriate depends on your individual diagnosis, treatment history, and circumstances.

Ask Perrie: Dating After Everything

Dear Perrie,

I’m wondering about dating after cancer treatment. I just worry that everyone will pity me and not take me seriously as a potential partner. Also, how to navigate the potential of needing care later on? How do you deal with that?

Dear Dating After Everything,

This is a tender and vulnerable question, and it makes so much sense that dating after cancer would feel complicated. Cancer can change how you see yourself, and it can make you wonder how others will see you, too. Wondering whether your potential partner will pity you or take you seriously makes sense to me; it’s a common concern I’ve heard from other YAs navigating dating. This can show up in other relationships too, not just romantic ones! I want to gently redirect you to an important follow-up question: What would it mean about the person and/or the relationship if that did happen? 

I ask this question because often when we are someone who is navigating the world of oncology, disability, chronic pain, infertility, and more, we begin to look at ourselves as the common denominator and therefore the problem. Having needs that may differ from someone your age, or who you were before cancer, does not make you the problem. Instead, I want to offer that the right person for you will stay curious about your experiences and won’t feel burdened by your medical history.  Your cancer experience is part of you, but it is not all of you. The right person will be able to see that. Sure, “normies” may need a little guidance at first (they haven’t had this experience before, after all), but I want to encourage you to notice if someone isn’t taking you seriously or giving you pity even after a conversation, then that is data about that person or the relationship.

Dating asks you to be seen, and that can feel vulnerable in a different way after going through something as significant as cancer. I also want to remind you that you get to decide how and when you share your story. Some people feel more comfortable being open early on, and others wait until there is more trust. There isn’t a right or wrong way to disclose your medical history. What matters is that it feels aligned with your comfort and your sense of safety! You get to decide if and when the person you are dating is safe enough (emotionally) to share this tender part of yourself with. 

The question about future care is a big one. Cancer can make the possibility of needing care feel more immediate and more real. At the same time, needing care at some point is part of being human and a normal part of being in a long-term relationship. There is a saying in disability spaces that disability is the only identity any of us can enter at any time. What you are naming is something many people carry, even if they are not always saying it out loud

A small reframe for you: You do not have to solve that question at the beginning of dating or a relationship. In fact, you may not want to solve it that early. 

Early on, it is enough to focus on whether this person is kind, whether they listen, whether they show up consistently, and how you feel in their presence. As a relationship grows, conversations about support, capacity, and care tend to happen more naturally. When those conversations come up, you can approach them with openness. You might share that your cancer experience has shaped how you think about support and that being able to talk about those things matters to you.

It may also help assuage any anxiety around long-term care by starting to have these conversations with yourself. For example, if and when you do need long-term care, what would be your priorities? Your major concerns? Are there any steps you could take now to have a plan in place? Things like a power of attorney, a will, or making some financial decisions could help you to feel empowered in navigating these concerns long before a long-term partner enters the picture. 

There is also something really important I am hearing underneath all of this. You are wondering if you will be seen as a full partner, someone who is desired, chosen, and taken seriously. 

Please hear me, you are worthy of all of that. Your worth in a relationship is not defined by your medical history. The right people will recognize that and see you for the full expansive human you are. If you find that you struggle with this idea, it may be time to join YA group spaces or seek out a qualified mental health therapist. Memorial Sloan Kettering has a podcast with several episodes on dating inside cancer, or you might even check out Elephants and Tea and see what other YA’s are writing about on this topic. You might also find some of these options supportive in the journey around cancer, dating, and self-love: 

Rooting for a love (and self-love) that accepts you fully,
Perrie 

Ask Perrie is Cactus Cancer Society’s advice column for the questions that young adult cancer doesn’t come with instructions for. Community members submit anonymous questions, and Perrie offers thoughtful guidance, perspective, and practical ideas for navigating life during and after cancer.

Submit your own question

When Cancer Isn’t Just Physical: Taking Care of Your Mental Health

Cancer doesn’t just change your body. It can reshape your identity, your plans, and your connection to the world around you. For many young adults, the emotional side of cancer can hit just as hard (if not harder) as the physical side, and it often lingers long after treatment ends.

Let’s get one thing straight: struggling doesn’t mean you’re weak. You’re responding to an extraordinary situation. The fear of recurrence, the brain fog, the sadness, the grief, the “what now?” questions, they’re normal reactions to an experience that turns life upside down! You are a human going through something extraordinary. 

Before you dive in further into this article, I want to invite you to take a breath and check in with yourself. Notice your emotional weather. If this feels heavy, pause and come back later. This content is here to support you, not overwhelm you, when you are ready. 

Below I’m going to talk about some of the common emotional responses to cancer, some of my lived experience, and recommendations I have to help support yourself inside of these experiences. 

The Emotional Whiplash of Cancer

When you hear “you have cancer,” your body can go into survival mode. Suddenly you are focused on making it to your next round of chemo or radiation, it can be common to feel as though you blinders on to the rest of the world while you navigate treatment. As your body begins to navigate the uncertainty of cancer, you might start to notice mood changes like depression, anxiety, or panic. 

You might feel it as restlessness before scans, dread before appointments, or sadness that doesn’t quite lift. These reactions are common, and I’ve had them! They’re not character flaws, they’re how your mind and body respond to uncertainty and loss. Even if treatment ends, these symptoms can stick around like uninvited guests or amplify. For me, this has felt like emotional whiplash. I went from auto-pilot in treatment to feeling completely overwhelmed in survivorship. 

A quality therapist can help you identify what you’re feeling and give those feelings room to breathe. Healing isn’t about being positive all the time; sometimes it’s about being curious, brave, or just willing to try again tomorrow. Research shows that therapists such as Acceptance and Commitment Therapy, Cognitive Behavioral Therapy, and Mindfulness are tools that can help survivors navigate the emotional whiplash of cancer. For me, I’ve found that Somatic therapies like EMDR (Eye Movement Desensitization and Reprocessing) and IFS (Internal Family Systems) to be very helpful in working through trauma. 

And something to remember small steps matter: getting out of bed, texting a friend, or joining a support group all count as movement toward healing.

The Grief That No One Talks About

Cancer brings loss in so many forms: health, independence, fertility, friendships, even the future you once imagined. This kind of grief doesn’t always get the validation it deserves. In psychology we often call this disenfranchised grief: grief that is not or cannot be openly acknowledged, publicly mourned, socially supported, or that is misunderstood or trivialized. People might say, “At least you’re alive,” when what you really need is validation and, “I know this is hard, I see you.”

Grief after cancer isn’t linear. You might feel peace one day and frustration the next. That’s okay. Think of grief as something you grow around, it doesn’t disappear, but you slowly learn to live alongside it. Grief isn’t a failure to move on. It’s evidence of how deeply you’ve lived, loved, and changed. Making space for your feelings of grief, talking about it with other YAs or survivors can often be an important step in learning how to hold grief compassionately. 

Body Image, Identity, and the Self You See Now

Many survivors struggle to recognize themselves after cancer. Scars, hair loss, swelling, weight changes……they’re visible reminders of what you’ve been through. And sometimes, it’s not just “I look different,” it’s “I feel different.”

Maybe intimacy feels different. Maybe mirrors feel like strangers. Research shows one in three survivors experiences lasting body image distress. These feelings are real and they’re workable.

Therapies that include body awareness, self-compassion, and narrative work can help you rebuild trust with your body. The goal isn’t to “get over it.” It’s to reclaim your story and reconnect with the self you see now.

When the Body Remembers: Medical Trauma

Cancer can be traumatic, period. The diagnosis, the hospital smells, the needles, the waiting rooms. Even years later, certain sounds or places can trigger physical reactions like nausea, panic, or tension. That’s called medical trauma, and it’s common.

You’re not overreacting. Your nervous system learned to protect you. Trauma-informed therapies, like EMDR, somatic work, or CPT (Cognitive Processing Therapy), can help your body learn safety again.

You can heal. You can trust your body again. It just takes time and the right kind of support.

Finding a Therapist Who Gets It

You deserve care from someone who understands that cancer doesn’t end when treatment does. A good therapist can help you process what’s happened, rebuild your sense of self, and learn new ways to live meaningfully with what’s changed.

Here’s how to start:

How to Find a Therapist

Search for professionals who specialize in oncology, chronic illness, or trauma.

  • American Psychosocial Oncology Society (APOS): Therapist directory focused on oncology support.

  • Psychology Today and TherapyDen: Let you search by specialty, identity, and location.

  • Inclusive Therapists: A directory centering BIPOC, LGBTQ+, and marginalized communities.

Most cancer centers also have social workers or psychologists who can refer you to trusted providers. And if in-person therapy feels hard to manage, telehealth sessions can make accessing care easier.

What to Look For

Credentials matter, but comfort matters more. Research shows the therapeutic relationship,  how safe and understood you feel,  is the strongest predictor of healing (Wampold & Imel, 2015).

When interviewing therapists, you can ask:

  • Have you worked with people affected by cancer or chronic illness?

  • How do you support clients with medical trauma or scanxiety?

  • What’s your approach to grief or body image?

Trust your instincts. You deserve a therapist who feels like a safe space, not another appointment to endure.

Mental Health Resources for Young Adults Impacted by Cancer

If you’re ready to start looking for support but not sure where to begin, Cactus Cancer Society has compiled a directory of trusted mental health and peer support resources just for young adults impacted by cancer.

Here’s a preview of what you’ll find there:

Inclusive & Culturally Affirming Directories

  • Inclusive Therapists — Find BIPOC, LGBTQ+, and affirming therapists across the U.S.

  • Therapy for Black Girls — A thriving community and therapist directory for Black women and girls.

  • Therapy for Latinx — Connect with Latinx-identifying, culturally responsive therapists.

  • Asian Mental Health Collective — Community and therapist directory focused on reducing stigma in Asian communities.

  • StrongHearts Native Helpline — 24/7 culturally grounded emotional support for Native Americans (1-844-7NATIVE).

Affordable Therapy Options

  • Open Path Collective — Sliding-scale therapy starting around $40–$70 per session.

  • TherapyDen — Inclusive therapist directory with filters for race, gender, and faith.

  • Psychology Today — Comprehensive national therapist directory with location and insurance filters.

Specialized Support

  • Neurodivergent Therapists Collective — For neurodivergent individuals seeking affirming care.

  • HeadsUpGuys — Resources for men’s mental health.

  • Give An Hour — Free counseling for veterans, survivors of violence, and those facing illness.

These resources were chosen with young adults in mind — people who need care that’s flexible, inclusive, and holistic. Take your time exploring. The right fit is out there.

The Strength to Keep Going

Taking care of your mental health isn’t about fixing what’s wrong. It’s about nurturing what’s still growing. You’ve already made it through so much,  that’s resilience! Therapy, support, and community can help you move from just surviving to truly living.

If you’re ready to find support that gets it, explore our full Mental Health & Peer Support Resources for Young Adults Impacted by Cancer. You’re not alone in this. Help is here — and you deserve it.

References

Álvarez-Pardo, S., López-Sosa, B., Pérez-Fuentes, M. D. C., & Gázquez-Linares, J. J. (2023). Factors associated with body image and self-esteem in mastectomized breast cancer survivors. International Journal of Environmental Research and Public Health, 20(6), 5154. https://doi.org/10.3390/ijerph20065154

Bui, K. T., Liang, R., Kiely, B. E., Brown, C., Dhillon, H. M., & Blinman, P. (2021). Scanxiety: A scoping review about scan-associated anxiety. BMJ Open, 11(5), e043215. https://doi.org/10.1136/bmjopen-2020-043215

Cowles, K. V., & Rodgers, B. L. (1991). The concept of grief: A foundation for nursing research and practice. Research in Nursing & Health, 14(2), 119–127. https://doi.org/10.1002/nur.4770140207

Hayes, S. C., Strosahl, K. D., & Wilson, K. G. (2011). Acceptance and Commitment Therapy: The process and practice of mindful change. Guilford Press.

Hofmann, S. G., Asnaani, A., Vonk, I. J. J., Sawyer, A. T., & Fang, A. (2012). The efficacy of cognitive behavioral therapy: A review of meta-analyses. Cognitive Therapy and Research, 36(5), 427–440. https://doi.org/10.1007/s10608-012-9476-1

Kabat-Zinn, J. (2003). Mindfulness-based interventions in context: Past, present, and future. Clinical Psychology: Science and Practice, 10(2), 144–156. https://doi.org/10.1093/clipsy.bpg016

Kübler-Ross, E., & Kessler, D. (2005). On Grief and Grieving: Finding the meaning of grief through the five stages of loss. Scribner.

Niedzwiedz, C. L., Knifton, L., Robb, K. A., Katikireddi, S. V., & Smith, D. J. (2019). Depression and anxiety among people living with and beyond cancer: A growing clinical and research priority. BMC Cancer, 19, 943. https://doi.org/10.1186/s12885-019-6181-4

Oncology Nursing Society. (2018). Post-traumatic stress disorder (PTSD) in cancer survivors. Retrieved from https://www.ons.org/publications-research

Porges, S. W. (2011). The Polyvagal Theory: Neurophysiological foundations of emotions, attachment, communication, and self-regulation. W. W. Norton & Company.

Shapiro, F. (2017). Eye Movement Desensitization and Reprocessing (EMDR) Therapy: Basic principles, protocols and procedures (3rd ed.). Guilford Press.

Spiegel, D., & Classen, C. (2000). Group therapy for cancer patients: A research-based handbook of psychosocial care. Basic Books.

Tedeschi, R. G., & Calhoun, L. G. (2004). Posttraumatic growth: Conceptual foundations and empirical evidence. Psychological Inquiry, 15(1), 1–18. https://doi.org/10.1207/s15327965pli1501_01

Tonkin, L. (1996). Growing around grief: Another way of looking at grief and recovery. Bereavement Care, 15(1), 10. https://doi.org/10.1080/02682629608657396

Uchino, B. N. (2006). Social support and health: A review of physiological processes potentially underlying links to disease outcomes. Journal of Behavioral Medicine, 29(4), 377–387. https://doi.org/10.1007/s10865-006-9056-5

Wampold, B. E., & Imel, Z. E. (2015). The Great Psychotherapy Debate: The evidence for what makes psychotherapy work (2nd ed.). Routledge.

White, M., & Epston, D. (1990). Narrative Means to Therapeutic Ends. Norton.

Desert Dispatch: A Sustainability Pop-Up

I love projects that feel intentional and a little rebellious in the best way. The kind that invites you to slow down, touch real paper, and make something without pressure or performance. That’s Desert Dispatch.

For a limited time, Cactus Cancer Society is releasing a Desert Dispatch Sustainability Pop-Up, a limited-edition art experience with just 50 dispatches available. Created by young adult cancer patients, survivors, and caregivers, each dispatch delivers creativity, connection, and a moment worth savoring straight to your mailbox. Paper still hits different.

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Cody’s Corner: New Year, Same Me, & a Slightly Bigger Bubble

Welcome to 2026! Yes, it’s already 2026…somehow. No idea how we’re over halfway through
the decade, but that’s what my calendar says!

2025 is over with – let the last of that year fade away like the vestiges of warmth after leaving the
cocoon of blankets on your bed in the morning.

I hope all of you ended 2025 (or welcomed 2026!) in your ideal way, be it a party with friends or a relaxing night at home. For me, I usually spend it at home with my parents and sister watching movies and eating hors d’oeuvres that my mom made. We’ll turn on the Times Square ball drop around 11:30 or thereabouts and count down when the clock runs towards the final seconds of the year: ten, nine, eight, seven, six… and when it hits midnight, we’re in 2026!

Every single thing we do after that is the first time that we have done that since 2025. Take a breath one second into the new year? That’s your first breath of the year! Take a sip of a drink? Wow! You haven’t drunk anything in a year! What are you doing next in 2026?

At the start of the year, many people make New Year’s resolutions – I remember reading a study once that said only around 10% of resolutions are kept. Personally, I’m not a resolution kind of guy – but the stereotypical resolution involves dieting, exercise, or some other kind of societal pressure. I have never been a resolution setter, but I will sometimes do a personal inventory -nothing formal, just a quick look inside and see what Inside Cody is saying. Then I’ll see if I can categorize these wants and needs and figure out the difficulty level of it. I’ll have short term (1-2 month), medium term (3-6 month), and long term (6-12+ month) goals – most of mine are in the short and medium term, since with a chronic cancer I can’t really go “five years from now…” (who knows where I will be in terms of treatment? Right now I am doing well on my trial, but who knows how long I will be doing this well?). I need to focus on the here and now, while having a bit of an eye looking towards the future.

Now you might be wondering, “What things might you want to do in 2026, Cody?” Honestly, I
don’t know. I have a rough sketch of my year – I will probably try to write a few articles for
Elephants & Tea I’ve been thinking about applying for a scholarship to Stupid Cancer’s Cancer Con  in Seattle from April 30th to May 3rd. Scholarship applications open January 5th and close January 19th, and I am going to try my darndest to attend Young Adult Cancer Camp, which is put on by Elephants and Tea and Young Adult Survivors United. If you haven’t been to that camp, I highly recommend it.

This year I will continue to attend some of my favorite Cactus Cancer Society programs: Coffee & Oodles, 30 Minute Tune Up, and the Guy’s Discussion Group. I don’t know what else I will do
this year, but I will definitely keep you guys up to date – maybe there will be something that you
will also be interested in trying out!

As I write this article, snow blanketed my yard overnight. Birds keep flocking to the window
feeder that we have (and most of them are fleeing before I can get a picture!). The snow is nice
and fresh – untouched by animal paw prints and people (…for now). Here’s a photo of my yard
that I took while taking a break from writing this.

2026 is a new year – we don’t know what awaits us, no matter how hard we glare at the snow in
the field that is the next 365 days. We might find some great things, we might encounter some
horrible things, and we’ll hopefully have a lot of bland, boring days in the year ahead. Now that
my chronic cancer is stable I adore the bland, boring days. I have my days where I am
interesting – I will always have those days by virtue of having a rare cancer, my body will
inevitably do something to interest someone (even if it is just a one-time abnormal result on a
blood test), but I hope to avoid those days as much as I can.


While I relish the bland and boring, every day being the same is nice…to a point – it’s a warm
comfy blanket of sameness, it’s the place you feel the safest, the comfort zone. Leaving the
comfort zone is hard, why would I ever want to do that? It becomes boring doing the same thing
day after day, so occasional steps outside of the comfort zone are necessary.


Leaving the comfort zone is especially difficult for me – I’ve mentioned in the past that I am
autistic, and one of those stereotypical autism traits is that we don’t like change. That rings true
with me! I dislike change, I don’t like spontaneity, I don’t like things being shaken up. When I go
on a trip, I make an excel spreadsheet beforehand with restaurants and activities saying what
day we should go to what restaurant for what meal, what activities should happen that day, and
I all but schedule our free time! I take comfort in the schedule, comfort in the routine, I know
what is coming up; sure, a wrench might be thrown in the works every once in a while, but those
are ideally few and far between.


This year, I will expand the bubble that is my comfort zone. I will try to meet up more with my
cancer friends (some of us already meet monthly for a trivia night at a local restaurant!) so
meetups with them are firmly in my comfort zone. I will push as much as I semi-comfortably can,
since you cannot leave your comfort zone without some discomfort; some unpleasantness, even
while doing fun activities, will always be present – the anxious brain loves doing that.
When I write these articles, I usually listen to some music to help my brain focus, concentrate, to
let the ideas flow from my brain to my keyboard. A song I was listening to on YouTube (I usually
listen to stuff on Spotify or YouTube) snatched my attention through the introduction of the
music video. It’s a spoken bit that goes as follows:


“I feel like stepping into a new version of yourself kind of feels like a death. We grow, make
mistakes, move on, and then one day we wake up and realize we’re nothing like the person we
once were. That person just vanished, disappeared completely and we never got to say
goodbye.” From Rest in Peace by BLÜ EYES.

This makes me think of two things at the same time: me before cancer and me after diagnosis (I
will never really have an “after cancer” in the sense of it being gone outside of the scanxiety
specter that haunts all of us). Me before cancer was shy, timid, anxious, an occasional self-
advocate, and someone who was an occasional fixture in waiting rooms. After diagnosis? I’m
shy, timid, anxious, an accidental advocate, and a fixture in waiting rooms. Sure that doesn’t
sound like much, but it is. My nervousness led me to research a lot in the initial days post
diagnosis; I found a lot of the resources that I recommend to people now in those days where I
was on the couch muttering “ow” whenever I moved because I was recovering from a bone
marrow biopsy. I didn’t wake up one day suddenly knowing how to do these things – it gradually
happened over time, like a snowball rolling down a hill until one day I was slinging resources like
it was my job or something. You don’t realize the gradual changes because they are just that –
gradual. They happen slowly over time at a pace where you don’t even realize it is happening
until suddenly we’ve changed. Ideally, the change has been for the positive and we can
embrace it – but sometimes it isn’t, but we can work on improving that, we can change.


In the spirit of Coffee & Oodles, why not take five minutes and respond to that spoken piece?
Maybe listen to the full song. What comes to mind when you think of the you who vanished?
Who do you want to grow into? The start of a new year is a great time to think about the you
that you want to put forth this year; who do you want to grow up to be this year? Who do you
want to be in 2026? What are your goals? Grab a piece of paper or open up your preferred word processor and let the words flow, you might surprise yourself.


I hope all of you have a wonderful January!

Now, it’s time for some resources!

This is the time of year where if you are thinking about going to an outdoor adventure camp, you should start checking out the different organizations and
looking at their schedules to see what fits into your calendar. As a note, I have not attended any of these – I have just heard of them.


The most popular one in the YA community is First Descents, and they have programs based around the country (they recommend you go to a program located in a place you haven’t been to in order to get the full experience) where you do rock climbing, kayaking, or surfing (different places for each activity). If you are wondering what accommodations they can make, they have an adaptability guide here.

Other ones include Camp Koru, which is a camp that does surfing.

Epic Experience is a weeklong camp in Colorado.

True North Treks is an organization that leads cancer survivors on hikes that are 4-6 nights long.

Camp Mak-a-dream is a camp based in Montana that has programs for people of all ages affected by cancer. Note: Their young adult programs are for people aged 18-35. Their Young Adult Conference is August 12th-16th and their Young Adult Brain Tumor Camp is June 17th-22nd. Applications for those open February 9th.

Have a question for Cody? Want him to write about a specific topic? Reach out! program@cactuscancer.org